Personal Experiences of a Prostate Cancer Survivor

Share article

I am a 51 year old man, who since I was 48, had been getting PSA readings in
excess of 4.0 during my annual physical exams.

At first, little was thought about these 4.2, 4.3 readings, but when they
started to edge up even more, my family physician suggested I see a
urologist.

I went to a urologist, and as "luck" would have it, I draw a female
physician. What can I possibly discuss with her that she can relate to
regarding my symptoms and concerns.

Her name is Dr. Elaine Rosner* and she practices in Boulder, Colorado. Elaine was all business. She asked me about symptoms other than the high PSA. I told her that I had begun to experience a decrease in the "power" of my ejaculations during sex with my wife. Elaine said she understood my concern, but I honestly didn't know how any woman could know what I felt, or how concerned I was becoming over both my physical
problem and the rising PSA scores. I was certainly becoming comfortable with
Dr. Rosner, and even though I doubt she could understand precisely my
diminishing sexual performance, we settled into a good working first name
relationship, which in itself bears some explanation.

When we first me, during my initial urology appointment, Dr. Rosner had
walked into the exam room, introduced herself as "Dr. Rosner" and basically
told me to..."drop 'em." She went on to explain as she gloved up, what she
was doing, and that it was nothing to be concerned about, which I thought was
easy for her to say, since I was the man being prodded. It was as that
moment, as she completed the digital exam, that I recall saying to her, since
she and I were about to become "intimate" friends, I would call her Elaine,
and she could call me Ron, since she was insistent upon scheduling further
check-ups.

Elaine's first course of treatment for me, since she found nothing terribly
unusual during her first digital exam of me, was to try Cipro, 500 mg twice a
day for about 2 weeks, just to eliminate any prostatitis or low grade
infections. After all, I was too young and too strong to suggest any other
possibilities.

After the Cipro treatment, my blood was retested, and my PSA score continued
to climb, over 5.0 now. So, Dr. Rosner suggested a biopsy. Frankly, having
never experienced a biopsy, I wasn't too frightened, and I figured it might
clear up the rising PSA question.

I recall, as I lay on the exam table, "this must be what it feels like to be
a woman, with a male OB-Gyn poking and prodding around my insides, and telling
me that, "...this will feel cold...now you'll feel some pressure...okay, now
you can watch the monitor over there and we'll get some pictures of this as
part of the procedure."

Even though I was told by Elaine's female nurse assistant that the biopsy
would feel like a snap of a rubber band inside me, I wasn't prepared for the
first "hit". I felt as if I had just been lightly kicked in the groin,
nothing severe, but a slight wave of nausea...This is where I decided that
watching the monitor was not for me. I clearly remember counting the "snaps"
of the biopsy, as a total of 6 tissue samples were removed within a few
minutes that felt like hours. I got up, left the office, and drove home to
wait the 4 days for the results.

Although it was over 2 years ago, I vividly remember making the call to check
on my results. I had told my wife, "...no sweat, everything will be fine",
and for my friends, I "acted" as calm as usual. Inside, I had spent a very
long 4 days wondering if I had cancer. When at last I made the call to Dr.
Rosner's office, one of her staff simply stated, once I had identified
myself, that the results were negative, and said goodbye.

I'm sure I said thanks, but the tears of relief that filled my eyes as I sat
in my office at work made it hard to say anything but a silent, "Thank God".
I didn't have cancer. I was healthy. So I forgot about cancer for at least
6 months, until my next PSA test was scheduled, and moved on with life.

The results of my first biopsy were negative, but subsequent PSA blood tests continued to reflect increasingly higher readings. Something was definitely screwed up. The results during sex,
although not impacting performance, were still not what I expected, nor were
the PSA scores of 5.4. So, Dr. Rosner suggested we wait, and check PSA again every 3 months, which we did, showing continuingly increased PSA test scores,
reaching as high as 6.4.

Elaine once again suggested that I undergo a second biopsy. This time I knew
what to expect, and was less than excited. But I was also concerned that
something was not right, and it was happening inside of my body. So, I
agreed to the test. It was even more uncomfortable and anxiety-causing
because I knew what to expect. And counting up to the 6 tissue samples
seemed more excruciating than before, but it was over in minutes, and again,
I drove home with hopes of a positive outcome.

Several days later, I again received the results which continued to show no
cancer. At this point, Dr. Rosner and I agreed that I had a high baseline
PSA, but would continue to monitor things about every 3-6 month with PSA
testing. After all, how many biopsies can one do with no results?

During the next several months, because of my EMT training and interest in
medical procedures, Dr. Rosner invited me to attend a Radical Prostatectomy
procedure on one of her patients who had agreed to allow me into the
operating theater to watch. It was incredible. I was reminded of the joke
that if you really like eating in a particular restaurant, you should never
ask to see the kitchen.

The operation looks and is radical. It took just over 3 hours, and I watched
from just a few feet away as the bladder, ureter, urethra, and prostate were
all cut, disconnected, and then reconnected and replaced. All but the deadly
cancerous prostate. I recall saying to Dr. Rosner that it was fascinating,
but given a choice, I would never ever want to have that procedure done to
me. It just looked like it hurt. And to be catheterized for weeks
afterward, no thank you.

And so the weeks and months went by, and an opportunity to relocate to another state presented itself to me and my wife, and by the end of
summer, 1995, we became residents of Jupiter, Florida, bidding farewell to
Dr. Rosner, prostate biopsies, and our friends in the Boulder area.

On my 51st birthday, November 1995, I scheduled my annual physical exam,
including a PSA test. Everything came back perfect - except my PSA. 7.2!!
I couldn't believe it. I was immediately sent for a retest, and the retest
came back at 6.4. Better, but not good.

My HMO physician sent me off to my newest urologist, Dr. Henry Baldwin*.
Surprise! He wanted to do a biopsy. By this time, I felt as if I could do
the damn things myself. We scheduled the test, not as uncomfortable or
disconcerting as the first two, but never-the-less, not fun. Because of my
HMO, I had to wait 2 weeks for the tissue sample results. That can be an
eternity to a potential cancer victim.

I returned 2 weeks later to Dr. Baldwin's office. The doctor asked me how I
felt after the biopsy, and if I was doing okay. I was actually lulled into a
sense of security by the small talk, figuring he would be somber and all
business if the results were bad. But here we were talking and chatting, and
I began to feel buoyed in spirit.

That's when Dr. Baldwin said, "The results came in, and you have a Gleason score of 6; you have prostate cancer." I felt like I had just been punched in
the stomach. I sat there, and the first words I said to Dr. Baldwin were,
"That sucks, that really sucks." He said, "Yeah, it does." Then I said, "Are
you certain? I want a second opinion." This was on February 15, 1996.

I paid for a second opinion, and got the same answer. I had prostate cancer.
I remember saying to Dr. Baldwin that I couldn't take time off from my
business, I'm a consultant, and if I don't work, bills don't get paid. I
also remember what he said to me, " I really don't give a damn if your bills
get paid. I'm your doctor, you have cancer, and I care about making you
well. What good will your money be if you're dead?" Now that got my
attention.

We discussed options, radiation, surgery, implants, cryo-therapy and
combinations of treatments. But Dr. Baldwin would not be swayed. He said
surgery, and I said, I need time to do my own research. And I did. For 2
weeks, I called the American Cancer Society, my former family doctor, Dr.
Rosner, specialists, cruised the Internet, and kept coming up with the same
consistent answer - surgery. But, I wasn't convinced, yet.

During this time, I received a phone call from a friend of my sister's
ex-husband, a man I didn't even know, and to this day have never met. But he
had just undergone the surgery for prostate cancer, and because of his
research and experience, was on a one-man crusade to get me into surgery and
off the fence. His name is Robert Simms*, and although we have never met, I
believe Robert saved my life.

Robert was relentless. He sent me pamphlets. He cajoled me, bullied me, told
me I was being a wimp, and cure was only available through surgery - He
quoted the 10-15-20 year statistics. He knows his stuff. "Besides" he said,
"it really isn't a big deal." I don't know if Robert Simms wore me out,
convinced me, or scared me, but I finally decided that if this was
appendicitis, I'd want the appendix removed, so why not remove the prostate?

Working with Dr. Baldwin, I began giving my own blood transfusions so I would
receive my own whole blood back during the surgery, which was now scheduled
for April 11, 1996 - 33 of the longest days of my life away.

My family, my sister and wife in particular rallied to my side, and we
decided to ask one of the world's experts about the surgery, well in advance
of its occurrence. My sister called the offices of a urologic surgeon who has been a pioneer in the development of the nerve-sparing prostate procedure I was to undergo. To our pleasant surprise, his office took the call, and informed us
that one of his former students and colleagues was now practicing in
the West Palm Beach area, and might be available to assist in the surgery.

We called the former colleague, a Dr. Ned Black. Dr. Black was
happy to assist Dr. Baldwin, but he was not covered by my insurance, and if I
used him under my HMO plan, and he billed the insurance carrier, I would be
exposed to more than 50% of the total cost of the entire hospital and
surgical event. Believe me, economics are a terrible reality of healthcare.

Dr. Black and I worked out an agreement suitable to me and my wife, which was that he
would assist, and we would pay him privately, directly, as part of the team,
without impacting the 100% coverage offered by my HMO. Dr. Baldwin too, was
pleased to have such a skilled surgeon join the team, and had supported our
efforts to recruit him.

As the weeks passed, my fears, which had bordered on stark terror as a victim
destined to die of prostate cancer, began to subside. My blood pressure
stayed high, but by the time the week of surgery arrived, I was reconciled
and ready to handle it.

I completed the 2 day pre-surgery liquid diet fast and multiple laxative and
enema inconveniences, and at 4:30 AM on Thursday April 11, I entered the
hospital. I was in good spirits, convinced that attitude is more than half
the battle. By 7:00AM I was in a hospital gown, resting in a holding room,
talking to my wife. By 7:30, I remember nothing until I awoke at 11:30 AM in
ICU/recovery.

I had opted for an epidural block anesthetic, combined with general
anesthesia, and upon waking, was fairly lucid, asking Dr. Baldwin if they
had successfully saved the nerve bundles which, if removed, assure impotence.
I was told that both sets of nerves were spared, and I had done well, and
things looked good. But the complete pathology would take several days to be
finalized.

Let me digress for a moment, to discuss the fears of incontinence and
impotence. My wife and I talked about the risks prior to surgery, and we
both agreed that although sex was an important component of our marriage, it
was not the basis upon which our love existed. If the nerves allowing
erection were removed during surgery, we would find a way to either get
around the problem, or learn to live with it. But LIVE became the operative
word here.

Incontinence is actually the more frightening aspect of the surgical
procedure. What 51 year old, fairly athletic, and very active man wants to
visualize himself wearing Depends for the rest of his life? Right, not one.
And that becomes the enemy, not impotence, but getting back to normal.

I was out of bed the day after surgery, walking, pushing a pole to which
there were enough wires and IV drips to make me look like the $6 million man.
But true to Robert Simms's prediction, the pain was minimal, and very
tolerable. And recovery is very fast. I was disconnected from everything,
pain medicine included, by Sunday, and walking around with just the catheter.
On Monday, I was released from the hospital.

Four days, 4 days! Incredible. And the catheter. As a man, I can say that
the thought of being catheterized was by far the most frightening aspect of
the entire cancer ordeal. In fact, my imagination in general worked
thousands of overtime hours for nothing.

The surgery was a breeze. The catheter is a mild inconvenience. I've been
out walking every day since I left the hospital, and the remaining 2 weeks
until its removal will go by, not as quickly as I would like, but it's not
too high a price to pay. In fact, there is a great deal of humor that can be
found in that and other aspects of the surgery.

Friday, April 19 was another milestone day. The results of the pathology
came back. Was I to be listed as cured, or did the cancer get away from the
prostate, and was I looking at radiation, chemo, or more surgery.

It was close. Everything came back perfect. The cancer had come within 1
millimeter of breaking out of the prostate, but in fact had been caught in
time. Time. If there is any message that can spell the difference between
success and anything else in the detection of this cancer, it is being tested
early and annually, and acting quickly once cancer has been found. One
millimeter, a few human hairs of tissue thick, was all that remained between
me being cured, and a survivor, and my ongoing war with cancer.

I was having a few minor but
annoying leaking problems with my catheter and called for
an appointment. When I saw my urologist , he was satisfied with my
progress, and being 18 days post-operative, agreed to remove the catheter.

The removal of the catheter was relatively quick, simple, and painless. The
relief of no longer being attached to a tube is enormous. What is even
better, is that I have already discovered two crucial facts concerning my
recovery, the first of which even surprised my doctor: 1) I am potent, and
experienced several erections even while wearing the catheter; 2) I regained
almost complete bladder control within hours of the removal of the catheter -
virtually dry as a bone with no leakage.

I will wear a small protective liner for a few days, until I am sure that I
have full control, and as the Kegel exercises further improve the muscle tone
of the bladder sphincter, I have no doubts that I will be truly fully
recovered within a week. I continue to take it easier than usual, but exercise daily by walking, and I feel great!

I have no doubts that the prayers of my friends, associates, and my family
with their strong support; my wife, Lisa; the caring work of some fine
doctors and incredible nurses; plus some divine intervention all combined to
bring me to the point where I can say that I am a survivor.

I look forward to many years of carrying my message of hope, a positive
attitude, and continued vigilance to others who will be facing this challenge
in the years to come. It is my hope that research on the part of prostate
cancer victims, survivors, and doctors will all combine to someday make even
the process that I underwent a memory of the past. Until that day, I can
only add my prayers to those of the next man to hear the chilling words, "you
have prostate cancer."

Aug 20, 2013 - Developing and using a personal website to chronicle their experience and communicate with others improves psychological and cancer-specific adjustment in women being treated for breast cancer, according to research published online Aug. 12 in the Journal of Clinical Oncology.